Hi Bean,

Since you still suspect you have oral cancer, a good idea is to have your biopsy slides reviewed by experts in cancer diagnosis/treatment/research. I suggest getting a second opinion from a National Cancer Institute-approved Comprehensive Cancer Center or NCI Cancer Center. There is a list of them on the OCF website.

An ENT is not qualified to make a diagnosis of what appears on the cellular level--that is the domain of pathologists. And, even pathologists at local, community or regional hospitals are not always aware of nuances with SCC HN. However, an ENT will probably scope you, do a visual exam and palpate your neck, and look at your scans and reports (if any have been done) as well as pathology reports to see if there is reason to suspect you have cancer. If you have a precancerous condition, the ENT would give an opinion on what he or she thinks is the best course of action.

Again, a second opinion from a CCC would be your best bet for getting reliable information about diagnosis as well as treatment options for cancer or for a precancerous condition. A CCC may confirm what you were told by your oral surgeon and/or regional pathologist. There are standards of care in the industry. But, you will want to have professionals who see more oral cancer cases than the average local cancer treatment facility. Their experience goes a long way in being more precise in diagnosing and treating cancer.

If you are diagnosed with cancer, and treatment is available, please reconsider your position about refusing treatment. It is an awful and painfully torturous disease when left to progress without intervention aside from attempted pain relief. Many people here, through either observation or anecdote, will attest to it being a horrendous way to die.

From what I glean from your post, you do not have a noticeable tumor but only some irregular cell activity. You are on top of your oral health--you will most likely be able to catch it at an early stage should it turn cancerous. Since early detection is crucial, it would seem you have the best chance for getting the least destructive treatment and the highest chance of a cure with relatively minor affect on your quality of life.

However, if you refuse treatment and then change your mind later, the cancer will become more advanced. It will be harder to treat, will cause more problems with future quality of life, and your chances for long term survival will be reduced. That is, if it isn't entirely too late to treat it. Besides, many here will agree that they do not regret having treatment. They are happy to be on this side of the grass and still sucking air.

We know our bodies and know when there is something that seems wrong. However, we can also let our imaginations get the best of us and worry before there is anything to worry about. Please don't do a great deal of worrying until someone gives you a definitive diagnosis of cancer. Cancer steals enough of a person's life. Do not give cancer anything until it demands it--which, it's possible it may never put its demands on you. Live your life, try not to worry, and think in positive terms. Focusing too much on illness, worrying, and having an attitude of doom is often self-fulfilling.

Get enough opinions to make you feel confident in your diagnosis. But, eventually, you will have to trust your doctors and act accordingly. Believe me, I know it isn't easy. If you get a diagnosis that you are cancer-free, rejoice!!! There is much living you will cheat yourself out of by dwelling on something that doesn't require more than a watchful awareness.

Good luck to you. I hope you are cancer-free!

Sandy